We Must Demand Better

There is nothing worse than watching someone you love deteriorate with an illness for which there is seemingly no cure. With a loved one, I am currently watching a nightmare that has unfolded for many years.  No-one else realizes how many things this loved one has tried to get better or that everything tried has failed. Watching her suffer has filled me with a sense of hopelessness and an even greater skepticism about our medical system. 

It is 2014, and one would hope we had better medical and mental health treatment; something that could give hope to those who feel hopeless.  But, the reality is that for many 'disorders', there are no good answers.  For 'invisible illnesses like Lyme Disease, chronic fatigue syndrome, fibromyalgia, all major mental health conditions, and many others, the treatment is guess work, at best.  People with these illnesses often feel isolated, hopeless and stigmatized.  I don't see people organizing meals for them or their families when things are particularly bad.  People with these chronic conditions feel great shame at having conditions that no-one knows how to treat.  In fact, many of the so-called 'treatments' that are tried actually end up making them feel worse.  Their ability to do basic activities is obliterated and yet, many judge them for having diseases that aren't visible, that aren't as easy to define as things like cancer or heart disease. 

Although I, too, suffer from an invisible illness, it is far worse to watch someone I love go through this torture.  Watching my loved one suffer with no hope in sight beats me down to the point of extreme hopelessness.  It is incredible how many people I have met who feel the same way; who have loved one's with various conditions who are not getting 'better'.  These families do everything they can to help their loved one in a system that is broken, that rarely has any answers.  Many wrongly assume there is good 'treatment' out there for some of these conditions, and they judge the sufferer or their family members for not 'getting' enough 'help'.  Believe me, if you were in 'our' shoes, you would know that all we do is try because to stop trying would mean giving up hope.

Perhaps the most frustrating thing is that we loved ones and sufferers alike have no energy left to fight for better treatment.  Everywhere we turn we hit brick walls until we are are left so beaten down that we can barely move.  This is unacceptable.

As a nation, we should be better than this.  It is not o.k. when I hear a story about a young man who cannot get help because the 'treatment' is sub-par and he is turned away because he doesn't fit the mold of whatever 'program' there is to help him; who is just too difficult, and thus, forgotten and left to die.  It is not o.k. when I hear of a friend who died of stage 4 lung cancer; who had a diagnosed mental health condition and all of her physical symptoms were ignored for months because the doctors thought she was 'just crazy'.   It is not o.k. when a young person I know is treated with medications that are doing more harm than good, when there are no good alternatives and no answers and she is left without hope to potentially die.  It is not o.k. when countless people with various pain, immune, mental health and fatigue disorders are left behind by a system that is just too baffled to put resources into helping them.  So much promise, lost.  So much hope, gone.

For our love ones and for those suffering, there must be a change in our attitudes.  We need to stop offering 'helpful' tips when someone talks about their chronic pain, mental health issues, fatigue, etc.  Those suffering have heard and probably tried every 'helpful' tip you have to offer.  We must listen to and support families with chronic mental and physical health conditions.  Often, all that is needed is a listening non-judgmental ear.  Don't assume that if someone 'just got out more', or 'got a job', they could get better.  Many who suffer would love to be able to do work or socialize more, but they really can't.  Do not question their reality.   Most importantly, remember how much families and the sufferers are being tortured by these ongoing problems.  Offer practical support, offer emotional support and most importantly, drop your judgments if you do not understand.  

Finally, we must demand more options, more research for 'help' that really works.  We must crawl out of the holes that we have been forced into and fight for change.  Our system is not working for far too many people.  Something is horribly wrong.  We need help.  We need others, who may not suffer or even know someone who suffers from these disorders, to stand with us.  We need others to help us band together and come up with creative solutions.  Western medicine has been proven very effective for many conditions, but for some it is sadly lacking.  Doctors must open their minds to creative and holistic solutions and actually see that some of the 'treatments' they prescribe are often worse than the disorder they are treating.  Our whole model of 'treating' people needs to be turned on its head to understand and actually, help people with these conditions that are, at best, baffling. 

Currently, my loved one has barely any life at all.  Each day is excruciating torture due to physical and mental conditions. This person has tried treatment after treatment to no avail.  It breaks my heart when every day is the same nightmare for this person.  I cannot give up hope that he/she can truly live, love, laugh and dance again. I am astonished daily at the number of people in this country that are experiencing this same nightmare with us. We cannot let these lives that could be full of promise and joy fade without a fight.  We have to band together, families and sufferers and push forward.  We must demand better.